The VOICE of Health

“I literally owe him my life”

From Florida Hospital

It’s been a year since Sebastian DeLeon defied overwhelming odds to survive primary amebic meningoencephalitis, or PAM, commonly known as a brain-eating amoeba. The South Florida teen expressed his gratitude to the Florida Hospital for Children team whose quick action saved his life.

“I literally owe him my life, and I want to thank him and let him know he is the reason I’m still here,” Sebastian, 18, said of his doctor, Humberto Liriano, M.D., a pediatric critical care physician.

They spoke to a crowd of physicians Friday at Florida Hospital for Children’s third annual Amoeba Summit. The summit was founded by Steve and Shelly Smelski, whose son, Jordan, died from an amoeba infection in 2014.

Dr. Liriano said survival from amoeba infections is so rare that Sebastian’s case alone lowered the death rate from 99 percent to 97 percent. The infection is caused by the organism N. fowleri.

“Raising awareness of PAM is very important because early detection is key,” Dr. Liriano said. This year’s summit featured workgroups on research and treatment as well as prevention and awareness.

The small risk of amoeba infection shouldn’t be a reason not to swim in lakes and rivers, but Dr. Liriano had a few simple suggestions to reduce your risk.

His tips include:

  • Before you submerge, hold your nostrils shut with your thumb and forefinger.
  • Avoid swimming in dirty water.
  • Be extra cautious in lakes that are 85 degrees or warmer.
  • If you have a pool, ensure it is chlorinated.

Dr. Liriano also recounted the dramatic scene a year ago, as Sebastian, then 16, was hospitalized with an intense headache. His medical team was trained to recognize the signs and symptoms of amoeba infection, which also include fever, nausea, stiffness in the neck and confusion.

“I knew right away what we had to do,” Dr. Liriano said. Sebastian was administered a cocktail of several medicines and placed into a coma. Reasoning that the amoeba thrives in warmer conditions, they put the brakes on the single-celled organism’s growth.

“If we cooled him down enough, the amoeba might not reproduce or multiply,” he said, giving time for the medication to work. “It takes a team to help kids survive PAM.”

Even after his survival, Sebastian’s return to normalcy is another victory.

According to the CDC, Sebastian is one of four PAM survivors in documented U.S. history, and one suffered severe brain damage.

Since Sebastian’s cure, Dr. Liriano said he has received calls from physicians all over the country, though there haven’t been any more success stories.

Surrounded by television cameras, Sebastian said his next goal is to apply for college. Luckily, he’s got quite a story to tell.

“I’m going to write a pretty bomb essay because of all of this.”

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